Well as it turned out, JERRY had about 3 lung drains. Very short breath as if drowning. CLL doc called in a Thoracic Surgeon and that's all she wrote.
Surgeon planned on just going into lung with a scope and take material for biopsy. However he was unable to see anything. He ended up cutting and did a decortification - scraping off lung which was calapsed.
Biopsy showed CLL IN EVERYTHING.! Imbruvica was doing ok w/the blood, but the didn't do a good job all in all I guess.
After a year on Imbruvica he was taken off because of the pathology report and now trying Zydelig alone. Started 2 days ago.
He has been sooo ill from the operation, in hospital close to 3 weeks, 149lbs upon discharge (164 was the recent norm) along with the CLL symptoms: night sweats, low fevers, no appetite. We will see what happens now that the pills have come.
Anyone used this yet? There were no new trials right now. I read horrible things about this drug. Jerry won't listen to all the bad side effects, since he thinks he will start imagining things! This means that I have to be on the lookout.
Written by
deb1610
To view profiles and participate in discussions please or .
Oh my goodness Deb. You must be very worried for Kerry. I hope you're getting some support for yourself. Do you have children family and friends to be there for you? Let's hope zedelig is the answer in the long run without too many side effects. I can understand Kerry's reluctance to know the side effects I'm a bit like that too.
The following post by Cllcanada is about Zydelig---and you will find other posts in "Related Posts" .
Chris (Cllcanada) is a good source for this info. He is currently taking that Zydelig.
Jerry is really having a tough go of it, as are you in taking care of him and I hope there is a turn for the better with new treatment. Please get yourself some one-on-one support if you haven't already. I hope the medical team can help you for that part of your life as well as with the medical care.
I have been on idelalisib for 10 months, my counts are all in range. I hope he is on Bactrim and being monitored very closely. Any issues with lungs go to the ER. My only side effects are colitis and fingernails. CMV monitor and liver counts is imperative.
For me it has been easier than Imbruvica (ibrutinib)
Please be proactive and don’t ignore side effects, I hope Jerry does well
Hi I was on the orriginal phase ll trial for Zydelig. It worked for about 18 months with horrible side effects( collitis) for me. I've been on other treatments since and now am going to start Imbruvica. Your comment that Zydelig was worse for you caught my eye. In what way are they different for you?
I was on Zydelig for 2 years and 3 months. Most of those months everything was great. My blood was normal and I had few problems with side effects. I caught a very bad cold and all went to hell! I had every side effect hit me withing a few days: fatigue, pyrexia, rash, cough and loose stools extraordinaire. I stopped the drug for 17 days and the cold and side effects abated but my blood went through the roof and my spleen enlarged. I began Zydelig again 16 days ago. I'm slowly getting my life back together and touch wood, no side effects. I'll have a blood test this week and hope the numbers are heading back to normal. I think this drug isn't for everyone and if you're already "weak" from other issues it might be too much.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Bone marrow looking for MRD getting a surprise in the blood test, plus Dr. Kipps on fixed duration front line therapy
Prostate 
Looking for CLL specialist in Denver, CO
